Saturday, February 22, 2014

Brain cancer

So my MRI and visit with my brilliant neuro-oncologist this last Friday showed that my brain tumor has grown in the short time that I've been off Temodar (November 18th, 2013 was my last visit with him). I am honestly MAD, not sad (Zev came up with that term, isn't he clever?) and ready to fight this brain cancer and kick it's butt to the curb! Ha. Seriously, I told Dr. Schiff that I have too much to live for and he said "I know" and I trust that he and his wonderful team are on top of this and want me to succeed. I might even invite him to Zachary's gradation from college. He pretty much knows Zachary since the day he was born! Wonder if he'll still be practicing medicine then?

So for those not on Facebook, here's what I wrote recently (I will include the Devotional picture from Stormie Ormatian's devotional in the pictures below).

My devotional for today. How DOES God get it so spot on, EVERY time?!! Haha. So I'm up before my Z men and although I haven't checked Facebook since yesterday (my phone allows me to send a picture and post without logging in), I just wanted to first: THANK you all for your prayers and encouragement and to let you all know that there is going to be NO SELF-PITY or despair or giving up in this household. With God by my side and my sweet family and friends, I am ready for battle (brain cancer messed with the wrong gal!!) That peace that everyone was praying for these past few days WORKS!!!! As we sat in Dr. Schiff's office yesterday (he is so so SO smart but does not show his emotions often, although he did say "hi Zachary" a couple of times and smiled when Zachary couldn't keep still), I think I kept a calm and told Zev that everything was going to be just fine and that I felt a peace that surpasses understanding. God has GOT THIS. He has had "it" since the beginning and I believe His promise that he wants to give us HOPE and a FUTURE. I told Dr. Schiff that I planned to be around to watch Zachary graduate from college, to which he replied "I know." I know that he and his team are trying the very best that they can to help me achieve that goal, and I truly believe that prayer, a positive attitude, mixed with modern medicine, diet, exercise, ALL contribute to fighting this brain cancer. So, for my friends who want to help, here's what you can do, in this order! 1) PRAY. I believe that prayer works. Seriously. Dr. Schiff explained that 1/3 of brain cancer patients who undergo radiation will see dramatic brain tumor shrinkage. Please pray with me that I am one of the blessed 1/3rd. 2) PRAY for my number one caregiver, Zev. I told him that he needs to remain strong and positive and have the attitude of battle and not of fear. Please pray that he is able to be strong for me. I feel strong today, but I know that as I get tired and go through radiation and take this new chemo (PCV) which is considered more toxic than the first chemo I was on (Temodar), that I will start to feel less confident and strong. 3) Pray for Zachary. He was worried when he saw me cry in the doctors office but then was back to his normal self when I smiled and told him that mama would be just fine. This just made me think of the moment when he said "mama...up" as Dr. Schiff was showing us the MRIs from November and the one from Thursday night and Zachary put his left hand on Dr. Schiff's right shoulder as I was leaning in to get a better look. Dr. Schiff said that it was ok and I think I detected a smile :-)) 4) Please pray that this treatment works once and for all to kill this brain tumor already! Yes, although Zev and I are so grateful to have treatment options up our sleeves, this isn't exactly a walk in the park and there aren't that many treatment options for brain cancer. It is a notoriously hard cancer to treat and if this next treatment should not work, it gets "experimental" (think clinical trials). We don't want to get to that point, which is why I am asking everyone to be strong and positive and put on your figurative breastplates and get ready for battle!! I am going to be arming myself with scripture and healthy foods and positivity every single day and I ask you to help me do that. I am glad that I went through 15 months of chemo last year, because I feel that experience helped me learn tons of things. This is not the time for crying on shoulders, because I've already done that and am ready for war. So please, no pity cards. I mean that with all the love in the world, but in order to fight this brain cancer during this next phase, I have to have the right mindset. 5) And lastly, not as important as prayer but just as important for long term outlook: SPREAD THE WORD ON BRAIN CANCER!! You now know someone who has this terrible disease! I am young and fit and for the most part, really happy with my life. I don't have ANY symptoms that are typical of brain cancer, especially of part of my tumor growing back, no lump to feel. I am not the only one like this. Brain cancer is the SECOND leading cause of cancer-related death in children; it is the FIFTH leading cause of cancer-related death in women aged 20-39. Brain cancer is notoriously difficult to treat because of its location: you can cut the tumor out, but then you'd be left with no brain. Not meaning to be funny (well I am sort of I guess :-)) but the only treatment options after surgery are radiation (once only to the brain) and chemo (very hard to cross the blood-brain barrier, hence the difficulty in developing good chemo agents). This is of course the layman's version of the science behind brain cancer, but here's what I know for sure: brain cancer is not talked about like other types of cancer (pink was already taken as a color and I champion the breast cancer fundraising and research too; I just want brain cancer to be talked about as prevalently). So, if you really care about helping me and furthering the cause of brain cancer research: talk about it! Yay! Please learn more about it. The National Brain Tumor Society at is a great start to learn more. Use your connection with me "this girl that I used to _______with in _______ has brain cancer! But she's fighting it and has so much to live for and is trying to spread awareness of it, in order to find a cure." If you feel led, help fund some research. Brain cancer unfortunately does not receive nearly as much funding as other types of cancer (it's that horrible grey color, I'm telling you!!) The National Brain Tumor website helps fund research, as well as my neuro-surgeon, Dr. Q and other groups. May is wear grey in support of brain cancer month (why does the official color for brain cancer have to be grey. I need to speak with someone about that. Maybe grey with pink sparkles or something?!! Haha). So yes, you will see me wear the boring yet important color of grey in May :-) Ok, so there is a gorgeous sunrise and I can hear little man start to stir. "Mama? Mama??" Gets my heart every time! Have a great day friends and thanks for reading! Love, Fiona xo

So there you have it! It's battle time folks and I am my team (Zev is second in command and willingly calls me General Grey with Pink Sparkles or the General/ Genny for short :-)) are getting ready to fight this battle head on! The official color for brain cancer is grey and the awareness month for brain cancer is May (hence the wear grey in May campaign). I love the concept and will wear grey (as much as it's NOT my color), but only if I can jazz it up a bit, like with pink sparkles! A girlfriend even said that grey and pink camouflage goes well together too! Love the ideas :-)

Enjoy the pics and thanks for your prayers :))


Lindsey said...

Praying for you dear friend! I am so glad to hear you are ready for BATTLE!!!!

Have a wonderful week!

Cassy Quick said...

We can do this, we can PRAY every DAY!!! You are the General and we are your soldiers, standing right behind YOU, and will we fight this battle! GAME ON!!!
PS - I so admire your courage & strength. God bless YOU! :)

Carrie and Andrew Rogers said...

Many prayers for you and your Guys as you kick this cancer's bootie. I had an old acquaintance have a brain tumor and she told me that she named hers and that it helped. Not sure if it is up your alley but we named mine and use it as a goofy spin.
Today is also rare disease day and I have seen a lot of fellows battlers posting their gray.
Lots of prayers coming from NC. :)
Carrie R.

Keith said...

I graduated AFROTC with Zev a long, long time ago and I was googling old names one night and found this blog, shortly after your collapse. I pray for y'all often and come back every now and then to check in. Your strength to battle this disease and raise such an adorable little boy at the same time is very inspirational. Count me and my family in that extended group of folks out there praying for you to win this fight outright.

BTW - Zev married way up, and I mean like in orbital or escape velocity type of "up."

Keep fighting and don't ever give up.

Keith Lyszkowski

Anonymous said...

with an attitude like that, you can get through anything. You have inspired me to face each day with a positive attitude as well. I will keep you in my prayers, I know you will win this battle. GOD SPEED! xo